Delayed reaction to Rituxan

Has anyone heard of a delayed reaction to Rituxan? I feel like I have the flu but I took the flu shot I early October.

You've been done for how long?
The flu shot is not 100% effective.

Can I get vaccinated and still get the flu?

Yes. It’s possible to get sick with the flu even if you have been vaccinated (although you won’t know for sure unless you get a flu test). This is possible for the following reasons:

You may be exposed to a flu virus shortly before getting vaccinated or during the period that it takes the body to gain protection after getting vaccinated. This exposure may result in you becoming ill with flu before the vaccine begins to protect you. (About 2 weeks after vaccination, antibodies that provide protection develop in the body.)

You may be exposed to a flu virus that is not included in the seasonal flu vaccine. There are many different flu viruses that circulate every year. The flu vaccine is made to protect against the three or four flu viruses that research suggests will be most common.

Unfortunately, some people can become infected with a flu virus the flu vaccine is designed to protect against, despite getting vaccinated. Protection provided by flu vaccination can vary widely, based in part on health and age factors of the person getting vaccinated. In general, the flu vaccine works best among healthy younger adults and older children. Some older people and people with certain chronic illnesses may develop less immunity after vaccination. Flu vaccination is not a perfect tool, but it is the best way to protect against flu infection.

www.cdc.gov/flu/about/season/flu-season-2015-2016.htm

Hey, how are you?

Very bad sinus infection. I was antibiotics last week but it came back with a vengeance. I am better today. New antibiotic and cough meds are working. Fever last night but so far today none.

That's good!

Well I am back in the hospital. Started bleeding this morning and coughing up blood due to some infection. Went to get a count due to symptoms and I am a 3 today. Waiting to get a room and some IVIG and meds for the infection.

Sorry to hear that. Illnesses and antibiotics can cause counts to drop. I hope things get better soon.

No fun D.Mann!

I hope you rebound from this nasty infection and feel better soon with higher counts!

D.Mann wrote: Well I am back in the hospital. Started bleeding this morning and coughing up blood due to some infection. Went to get a count due to symptoms and I am a 3 today. Waiting to get a room and some IVIG and meds for the infection.

Upsetting and disappointing, I hope IVIG gets you back on track quickly. Still too early to write off the Rituxan as a failure.

D.Mann wrote: Well I am back in the hospital. Started bleeding this morning and coughing up blood due to some infection. Went to get a count due to symptoms and I am a 3 today. Waiting to get a room and some IVIG and meds for the infection.

The infection is unidentified? Make sure they know you are on Rituxan and therefore prone to Pneumocystis pneumonia. It is actually classified as a fungus infection. It is often treated with high-dose Bactrim plus steroids.

Had chest X-ray and blood draw looking for bacteria.
I have the flu is what I was just told. Hospital is full I may spend the night in the ER.

Well the drugs are helping. The flu symptoms are almost gone already. My first dose IVIG is pumping in now. My doc mentioned Danazol again today but I am hesitant because my Rituxan ended just 3 weeks ago. It feels too quick to say it failed. Until this illness my counts were very slowly rising. I was up to 17 last week.

Good to hear things are going better D Mann.

FYI, I had a scratchy throat starting a couple of days before first Rituxan. In hindsight, that was probably the flu. It was my only symptom. But then, between second and third Rituxan got a really bad cold. Took lots of vit D and took walks everyday. Shook it off day before third treatment. As I understand, the flu often leaves you with a cold.

Aren't you still on 10mg Pred? If this goes anything like your last ER visit should get some really nice counts. This time you've got Rituxan going into Pred and IVIG. Interested to hear if this gives you significantly higher counts than last ER and last peak count.

LOL, as I learned with my appendectomy, if you can't sleep and they offer you morphine - take it. Put me straight to sleep

What a difference 24 hours can make. Flu symptoms gone. 1 dose of my friend IVIG and platelets are 28. Haven't seen 28 for months I know it is temporary but my nasty ITP symptoms are gone as well. Taking in IVIG 2 now. I am hoping that this will keep me boosted till my Rituxan kicks in.

Have they got you scheduled for 5 days of IVIG or ?

I think 3 in the hospital and 2 in my docs office. All depends on my count response.

WOW!
IVIG is really working great this time. After 2 doses I'm up to 53. Hoping that the Rituxan may be helping it out. It was days after the hospital and 60mg Prednisone before I saw 53 and that was my peak.

Kewl. Sounds like IVIG can be a rescue treatment now.
I did some searches on ITP treatments which combined Rituxan and IVIG, but didn't find anything.

Well I am 2 weeks out from my hospital stay. Flu was bad, the bleeding along with it was really bad. I ended up getting 2 doses of IVIG. My response this time is really good. My count today is 190!! When diagnosed I had 3 IVIG plus platelets and only got up to 119. Single digits both times to start. I am hoping that the great response is due to my December Rituxan starting to do its thing. No matter what I am very happy with 190 for now.

That's great! I hope they stay up. I'm glad you are better!

There is nothing like having a known, effective rescue drug. Probably as comforting to you as it was for me.
Curious. How many days was it between the last IVIG and the 190 count?

I was in the hospital January 18-20. My second dose of IVIG ended early morning of the 20th, that morning I was already up to 53 and the second dose was still infusing. So it was 12 days after. I can tell you the relief of just knowing that my count was above 30 was amazing. I even feel like I slept better last night, it really is a load off the old mind. I am hoping and praying that this is the beginning of remission (Rituxan). I am trying not to get too high because I know it could drop just as fast. I get a CBC in 2 weeks and CBC an Doc visit in 4 weeks.
Have you finished your Rituxan yet? Any change in symptoms or counts?

Oh my, 12 days later. That is a very good number. Nice. Mine was 142 some 13 days after last IVIG infusion.
Me? I'm on week 7, three weeks after last Rituxan. Still flat lining. Maybe I need an IVIG booster, LOL

Best of luck going forward !

There was a poster Rob who did rituxan on April 2nd and had remission October 22nd.

jayinchicago wrote: There was a poster Rob who did rituxan on April 2nd and had remission October 22nd.

That was Robert1959. He goes by "Robert."

Coming back down to earth a little. Had a CBC on the 15th. The count was at 74, still good I guess but was sure hoping that the 190 (Feb 1) was not all IVIG. I guess it was at least mostly IVIG. Next count in 2 weeks, hopefully I can keep it above 50.
Rituxin last 4 weeks of December counts in the teens and twenties.
January 18-20 hospitalized count of 3 with active bleeding (antibiotic and flu induced). 2 doses of IVIG
Feb 1 count 190
Feb 15 count 74

74 after four weeks? Nice! At the very least looks like you could be put into remission through more IVIG. Best case and most likely, Rituxan is doing it's thing and next test will be higher than 74. Barb was going up 10 per week. So add on 20?

14 weeks out I am up to 186. Slowly increased each week. It is sometimes slower or faster for others.

Just listening in, and I am so glad to hear your counts are doing well. It is such a great reward after so much.
I must add that I too did 4 infusions in Jan/Feb and by the second/third week I was at 399/414 and now after my last week ago I am at 428.
I find it strange how I can have such a fast and high response. It is the same with the high dose prednisone in about 3 days I would go from 13 to 150. On the flip side after tapering from the prednisone I could go from 200 to 13 in a week. That happened three times.
I do have auto immune disease which my hemo feels is the cause for my ITP. WHen my lupus flares it acts the same way from "0 to 60" in seconds flat as they say.
So I have to ask, do either of you deal with auto immune disease as well as ITP?
Best of luck, Sandy Too.

I also have Interstitial Cystitis which is an Auto Immune Disease. I had no response to prednisone. My numbers certainly didn't soar like yours. Mine started at 20 before first infusion. It has gone up steadily each week and hope it stays there!